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When you say something will be available in 8 years do you mean available to the public or available for clinincal trials on humans?

• Available to the public, hopefully.

Is it true that the success rate of a treatment or surgery that can restore function or improve quality of life is inversely porportional to the patient's post-injury time? 1 year is better than 10 years? If that's the case, one would have to decide between waiting for a safer and better procedure in the future or taking advantage of the window of opportunity now, right?

• No, I don't believe that the success of treatments is proportional to the time after injury. This is not the case, for example, for Dr. Huang's patients, so far. One of the reasons why I have been advising people to be patient is because I think that a better therapy in two years is preferable to a not-as-good therapy today.

FES does not seem to work below injury (T-8 to t-10 lesion & 2 years post). When I use FES I don't see my muscles move. Does that mean it's not working? Why is that?

• It is true that FES does not work as well with lower thoracic injuries that may have damaged some of the gray matter (containing neurons) that innervate the muscles of the legs. That is because the spinal cord ends at vertebral level L1. A T8-10 injury may have damaged some of the upper lumbar spinal cord segments. However, you should still be able to stimulate the lower muscles of your legs. Are you taking any baclofen and do you have any spasticity in your legs?

Is 1 hour a day on the standing frame enought to prevent Osteoporosis?

There is some preliminary data suggesting that if standing is started early after injury, it may prevent osteoporosis. Apparently, according to some studies, standing an hour a day alone is not sufficient to reverse osteoporosis. On the other hand, standing an hour a day plus taking biphosphonates and/or parathyroid hormone may reverse osteoporosis.

Thank you very much for your timeline prediction. I can live with 8 years better than never.

I have been off the forum for a while because for me, it created significant emotional ups & downs. Besides, I've been busy in a positive way.

I do have one question for you concerning decompression. A year ago I sent my MRI's to three specialists, one said I needed decompression, one said no, and the third never responded. I estimate my broken T-4 protrudes into my spinal cord 15-20%. No corrective surgery was performed immediately after my accident in 2002. If it is indeed confirmed that I need decompression, should I have it done soon or wait until I have "the total package" performed in roughly 8 years?

Schmeky, I always feel strange about making predictions. You should perhaps regard it as an achievable goal rather than a prediction.

Regarding your spinal cord, I would recommend that it be decompressed. Although there are some doctors who feel that there is no point to decompressing the spinal cord in a chronic patient, because they are pessimistic regarding any return, I feel that any compression of the spinal cord (even 15%) should be removed for the following reasons:
1. It is touching your spinal cord. There should be nothing touching your cord. Every time you move, it is pushing on your cord.
2. It may be compressing your cord by 15% while you are laying prone but it may do so more when you are moving or twisting your back.
3. It is very likely to obstruct some cerebrospinal fluid flow. That will predispose you to the formation of a syringomyelic cyst.

What you should do, however, is balance the risks and benefits of the surgery. I assume that the compression is from the anterior direction and that it is in the thoracic cavity. If so, this means that the surgery has to go through the chest. The surgery will not be trivial. It will be a long procedure and your chest will need to be opened. A decade ago, I probably would have said that such surgery would have been too risky. On the other hand, opening of the chest cavity is so commonly done today and many hospitals have extensive experience with heart surgery that they can crack open a chest, put in four bypasses, and the patient is out of the hospital in 3 days. The risk of such surgery is much lower today than it was a decade ago. So, if your doctor feels comfortable about it and his/her hospital has good support and experience in the procedures, I would go ahead with the procedure if I were you.

thanks for all of the helpful information dr. young. i have a few questions for you. you state that spasms and neuropathic pain are the result of a disconnect between the brain and the body. isn't much of our bodily function reflexive? is it the brain or the spinal cord triggering these reflexes?

i'm currently doing intensive exercise and my spasms interfere greatly with my workouts. many of my problems arise from what i call "reflexive" spasms. that is, certain movements and positions trigger certain spasms (most often extensor). for instance the clonus i experience from a stretch being put on the calf. essentially, my body reacts innapropriately to its environment, but it still reacts. i know locomotor training and exercise have been shown to, in some cases, harness such actions and re-teach or re-direct them appropriately. is this the result of re-established connections between the brain and body, re-programming of the reflexes in the spinal cord, or something else? in my experience human beings are not capable of consciously coordinating all that the body does. when you say a disconnect between the body and the brain, i assume you mean a subconcious or "reflexive" disconnect?

on a side note, when you're making predictions and setting timeframes for what you see as "achievable," are you speaking domestically in the united states, or do you take into account the possibility that these therapies may be available internationally in a shorter period of time?

these are 10 great questions and answers. Now I have a question for you. I am sure you have heard of those who sign up to be organ donors when they pass on. Is it possible to "harvest" the spinal cord cells from these individual and transplant into persons whom have suffered sci. Obviously a great number of other things would have to be done first. Do you know of anywhere this has been tried. I realize the spinal cord is probably the most complicated, with exception of the brain. Hearts, lungs, livers and much more are transplanted currently, with great success. It just seems the spinal cord material should be to. I know this sounds simplistic. Sorry in advance if this is a stupid question.

I am very interested in this FES and how it doesn't do a thing for me. At least I don't see anything moving or contracting.

My legs and muscles have been totally flacid since day 1 of injury. I do have neurological pain that can get pretty intense at times. I don't like using the word pain because usually I can block it out if I just don't think about it.

I've never had anything as much as a twitch. Weird huh? I've used FES all the way down to my feet with no success. Does this mean I'm probably not going to have success with the Ferticare. I'm getting married in March and plan on having kids.

Originally posted by Wise Young:

Originally posted by walkanotherday:
I have a few questions regarding your FAQ

When you say something will be available in 8 years do you mean available to the public or available for clinincal trials on humans?

• Available to the public, hopefully.

Is it true that the success rate of a treatment or surgery that can restore function or improve quality of life is inversely porportional to the patient's post-injury time? 1 year is better than 10 years? If that's the case, one would have to decide between waiting for a safer and better procedure in the future or taking advantage of the window of opportunity now, right?

• No, I don't believe that the success of treatments is proportional to the time after injury. This is not the case, for example, for Dr. Huang's patients, so far. One of the reasons why I have been advising people to be patient is because I think that a better therapy in two years is preferable to a not-as-good therapy today.

FES does not seem to work below injury (T-8 to t-10 lesion & 2 years post). When I use FES I don't see my muscles move. Does that mean it's not working? Why is that?

• It is true that FES does not work as well with lower thoracic injuries that may have damaged some of the gray matter (containing neurons) that innervate the muscles of the legs. That is because the spinal cord ends at vertebral level L1. A T8-10 injury may have damaged some of the upper lumbar spinal cord segments. However, you should still be able to stimulate the lower muscles of your legs. Are you taking any baclofen and do you have any spasticity in your legs?

Is 1 hour a day on the standing frame enought to prevent Osteoporosis?

There is some preliminary data suggesting that if standing is started early after injury, it may prevent osteoporosis. Apparently, according to some studies, standing an hour a day alone is not sufficient to reverse osteoporosis. On the other hand, standing an hour a day plus taking biphosphonates and/or parathyroid hormone may reverse osteoporosis.

All this rambling and I forgot to say thanks for the info. Thanks Dr. Young.

Here's some background info.
6/23/02 on vacation surfin in Oahu with gf. I had been lying face down paddling in water for about 20 minutes. On the first wave I tried to catch, I stood up on the board and felt a sharp pain shoot down to my legs. The sharp pain went away after a few minutes and then came a dull pain that felt like I hyperextended my lower back. Went back on shore 20 minutes later because pain was too bad. Very lucky I didn't drown. Lost all movement and sensation somewhere between beach and ER.

In ER they told me it was just inflammation since I didn't fall or get hit by a wave.
First week or so I go hit hard with 3 different kind of steroids (methyl, decadrone, prednisone). Paralysis seemed to have slightly moved up when they gave me a break from the roids so they put me right back on it.

By 3rd week on the big island, doctors were stumped. Nothing to operate on because no trauma, no flu-like symptoms, no clues. All they could do was wait for a spinal tap analysis to come back from LA. At the time a stroke nuerologist I was assigned to suspected spinal cord stroke, infarcation if that's not the same, and transverse myelitis.

Spinal tap showed some higher levels of glycoprotein and also alarming levels of myelin basic protein. They went with TM solely based on the myelin basic protein levels. The stroke neuro still says it could still be spinal cord stroke.

I eventually got a consult from Dr. Douglas Kerr in Hopkins TM center who said he didn't think it was TM and that it could have been from disc movement while surfing. He said either way what ever happened is very rare.

This all happened during the first 6 months or so.

If anyone wants to hear more of this long boring saga and how I traveled to Taiwan to get nerve growth cocktails from Henrich Cheng let me know. (it didn't work)

Originally posted by Wise Young:

Originally posted by walkanotherday:
I have a few questions regarding your FAQ

When you say something will be available in 8 years do you mean available to the public or available for clinincal trials on humans?

• Available to the public, hopefully.

Is it true that the success rate of a treatment or surgery that can restore function or improve quality of life is inversely porportional to the patient's post-injury time? 1 year is better than 10 years? If that's the case, one would have to decide between waiting for a safer and better procedure in the future or taking advantage of the window of opportunity now, right?

• No, I don't believe that the success of treatments is proportional to the time after injury. This is not the case, for example, for Dr. Huang's patients, so far. One of the reasons why I have been advising people to be patient is because I think that a better therapy in two years is preferable to a not-as-good therapy today.

FES does not seem to work below injury (T-8 to t-10 lesion & 2 years post). When I use FES I don't see my muscles move. Does that mean it's not working? Why is that?

• It is true that FES does not work as well with lower thoracic injuries that may have damaged some of the gray matter (containing neurons) that innervate the muscles of the legs. That is because the spinal cord ends at vertebral level L1. A T8-10 injury may have damaged some of the upper lumbar spinal cord segments. However, you should still be able to stimulate the lower muscles of your legs. Are you taking any baclofen and do you have any spasticity in your legs?

Is 1 hour a day on the standing frame enought to prevent Osteoporosis?

There is some preliminary data suggesting that if standing is started early after injury, it may prevent osteoporosis. Apparently, according to some studies, standing an hour a day alone is not sufficient to reverse osteoporosis. On the other hand, standing an hour a day plus taking biphosphonates and/or parathyroid hormone may reverse osteoporosis.

dr young, i started to go gym 2hours/day and did powerlifting 4 years before my injury. now im a 22 years old c6 quad, and i want to know if the exercise before injury means have better recovery in a case of cure
excuse my english.

thanks for all of the helpful information dr. young. i have a few questions for you. you state that spasms and neuropathic pain are the result of a disconnect between the brain and the body. isn't much of our bodily function reflexive? is it the brain or the spinal cord triggering these reflexes?

• Both spasticity/spasms and neuropathic pain involve hyperexcitability (abnormally increased activity of neurons). These result from two mechanisms. The first is disinhibition. Over half of the descending and ascending connections of the spinal cord cord are inhibitory, i.e. directly inhibitory by release of GABA or glycine neurotransmitters or connect to inhibitory interneurons (neurons that connect to other neurons in your spinal cord as opposed to motoneurons that connect to muscles). Many of the inhibitory connections connect to the sensory fibers that come into the spinal cord, i.e. called pre-synaptic inhibition. When these inhibitory connections are disconnected, the neurons that they previously innervated will become hyperexcitable. Second, disconnected neurons can get hyperexcitable all by themselves. Hyperexcitable neurons send inappropriate signals to the brain. These signals are often interpreted by the brain as neuropathic pain. That is why inhibitory neurotransmitters (e.g. baclofen, clonidine, tizanidine), drugs that change neurotransmitter levels (e.g. amitryptaline), and anti-epileptics (e.g. neurontin) are sometimes useful for treating spasticity/spasms and neuropathic pain.

i'm currently doing intensive exercise and my spasms interfere greatly with my workouts. many of my problems arise from what i call "reflexive" spasms. that is, certain movements and positions trigger certain spasms (most often extensor). for instance the clonus i experience from a stretch being put on the calf. essentially, my body reacts innapropriately to its environment, but it still reacts. i know locomotor training and exercise have been shown to, in some cases, harness such actions and re-teach or re-direct them appropriately. is this the result of re-established connections between the brain and body, re-programming of the reflexes in the spinal cord, or something else? in my experience human beings are not capable of consciously coordinating all that the body does. when you say a disconnect between the body and the brain, i assume you mean a subconcious or "reflexive" disconnect?

• The spinal cord above and below the injury site go through a lot of changes. There is sprouting and resculpting of connections in the spinal cord. In fact, several studies have shown that the lower spinal cord has the ability to "learn". For example, Reggie Edgarton has shown that a cat or rat with a transected spinal cord can not only be taught to walk on a treadmill but if you trip the animal with a stick during locomotion, it will actually learn to change its stepping mode to avoid stumbling or falling. Exercise affects the circuits in the spinal cord.

on a side note, when you're making predictions and setting timeframes for what you see as "achievable," are you speaking domestically in the united states, or do you take into account the possibility that these therapies may be available internationally in a shorter period of time?

• I was referring primarily to the United States but assuming that our government stops dithering around and supports clinical trials appropriately in the United States.

Great post Wise. As a newer member, still learning, it helped me sort through many of my own concerns. I also now have a great way to communicate information to people in my life that are asking questions. I will send this to everyone I know!